How do you have energy for your child’s constant appointments

[ItsBritneyBitch45]

I was going to post this in Children’s health but I assumed this board has more traffic.

My son is 7 months old. He was born at full term but spent 6 weeks in NICU and no one knew what was going on with him. He had SO many issues that I can’t even get into it. When he was 3 month old his neurologist told me that they found a spelling mistake in genetics meaning he has a rare genetic disorder called DYRK1A.

He’s under the care of the paediatrician, neurologist, dietician, ophthalmologist, physiotherapist and occupational therapist. I asked to be dropped from the health visitor as their appointments were too frequent and they didn’t know anything about him so it was just adding to the stress. The frequency of his appointments have calmed down a lot but he has physio and OT weekly or every two weeks. DS is also just about to start an intensive block of OT which means one appointment each week for 6 weeks (alongside our separate appointment for physio).

Now I’m sure some people reading this may think ‘that’s not actually that much’ but it is VERY intense. I also have a DD who’s 18 months old and I take her to two toddler groups a week. It’s very difficult to have two under two but when you have one with complex needs it’s even harder. I also have to try and have some sort of life by myself which means trying to go to the gym three times a week. I have a good support system too.

Tomorrow morning my son has a physio appointment at 10am and I just have no energy. It’s cold and there will be a bus strike tomorrow. His physiotherapist is really understanding and we get on quite well so I considered cancelling but I knew she wanted to squeeze in one more session before his intensive block of OT. I just wondered if anyone has a child with complex needs and wanted to ask how you cope with all the appointments? I really do find it tiring and so exhausting. My phone randomly broke a couple of weeks ago and I nearly had a breakdown because I no access to my calendar with all my DS’ appointments on it! I’m just struggling with all of this tbh even though I haven’t told anyone

That sounds hard. Although I’m impressed with a baby and toddler that you manage to fit in the gym.

You may want to post this on the SEN board too.

@upfucked Thank you for the suggestion, I may give the board I try depending on the type of responses I receive on here (if any). Making time for the gym or any other hobby/activity is entirely possible depending on what sort of support you have in place

Sounds like you are experiencing parent carer burn out. Totally understand how you feel. My ds has had patches in his life where the appointments felt endless.

I'm really pleased to hear you have a good support network and can still fit things in for you like the gym. It's so important to try and retain parts of your life that aren't just about parenting a child with complex needs.

Could you manage the appointment tomorrow, if you plan a very quiet time after it. All of you in pjs when you get back, christmas movie on t.v for you if they nap at the same time? Or even just treat yourself to your favourite lunch/snack from the shop in the way home.

You don't mention if you have a partner/husband, but if you do, it's okay for them to do appointments when they have leave. It's okay for other people to step in. As my ds got older, I realised I had to have breaks every now and again or I couldn't keep going. The appointments can be so physically and emotionally draining.

Really hope you feel rested soon.

OP I can't pretend to even begin to understand how difficult it is for you.

I used to look after a child (1to1) in a primary school, they had severe cerebral palsy and was a quadriplegic, the appointment they had were insane, physio twice a week, OT appointment every 4 weeks, Botox appointments and leg casting every 3 months, plus the appointments inside of school, senco, OT in every half term, speech therapist etc etc, plus I would do physio everyday at lunchtime as they required it 3 times a day

They were a only child and from a single parent family I just remember thinking how hard it must be and how exhausting for the mother

Big hugs to you op, you are doing a fantastic job, I'm glad you have a good support system and please take time out for yourself to recharge when you need to

We try to block our set days for appointments.

We have 4 children with additional needs. But youngest 2 have complex needs.

So currently my youngest on a Wednesday has portage, SALT and physio.

On a Thursday my son has SALT and Physio.

But some weeks are chaotic. As we have paediatricians, dieticians, speech and physio for them both (neither have the same person)

Then we have OT, bladder and bowel team, feeding clinic etc so when the annual 3/6/12m appointments come around it can be quite chaotic.

We often get breaks though. So take speech we do 6 weekly sessions. Then break for 6. We asked for breaks with others at times.

I can completely understand how you feel OP.

Our daughter has significant care needs and the rosta of appointments seem never ending. It was mostly health related until two years ago where mental health was thrown in too.

We have spoken to a couple and asked to scale back.

Tbh, I often question is there is too much intervention.

I have two other children and I feel they spend their lives being dragged along to appointments for their sibling.

YANBU.

I would find that very intense.

I think a couple of years ago I had about 6 weeks with an appointment at least once a week, for either myself or my kids. And I found that really difficult. I'm not sure how you manage with an appointment nearly everyday.

Have you tried claiming DLA. It is very hard for young chikdren as they all have a lot of care, but it might be possible.

Its just then you might be able to afford a taxi to appointments on cold wet days.

I second applying for DLA, and using the Cerebra guide to help you complete the form.

Have you contacted HomeStart to see if they can support you? And if you haven’t already been in touch with Unique it would be worth contacting them, too.

Thank you for your comment, it’s really helpful to speak with someone that understands how difficult it really is. You’re definitely right in regards to your first and second paragraph! I think especially now that it’s getting colder and it’s dark in the morning, I just have no motivation to get to the appointment. Physio and OT are usually done at home but the upcoming appointments will all be at the health centre. It’s such a small thing but that’s really thrown me off tbh. I’m very lucky to be able to still go to the gym, I even manage a solo Starbucks visit every now and again.

I’ll definitely go to the appointment tomorrow. I have a parenting course in the afternoon and then I’ll be at the gym but I’ll be able to have a cosy evening with the kids. I’m currently in a complicated situation with their dad. We broke up around the time DS was in NICU as there really wasn’t any emotional or physical support. Looking back it was a tough time for both of us and we didn’t really know how to process it all. He’s still very much involved. I usually take DS to the appointments and he stays with our DD at home or takes her out. I feel like I’m failing him by not being the one to take him as I know every single detail where his dad may not know as much as me.

I’ll take on what you’ve said and will actually ask if he can take DS tomorrow. He knows his physiotherapist so all should be okay tbh. Thank you for your advice X

Have you had a debrief &/or counselling following DS’s NICU stay?

Wow bless them all, that sounds so intense and so difficult. It’s hard when you realise that this is the child’s life for the foreseeable too. It’s just sad but thank you for your kind words, I really do appreciate it x

Having a break in between is a great idea. The appointments that we had in the summer were SO chaotic. We had 3/4 appointments a week for about 5/6 weeks, it was hell. The appointments have definitely calmed down now but I think the change in weather is making things harder for me. His care team also want to have frequent appointments because he’s so young, they want to help all they can right now. He has hypertonia so he really does need the OT and physio as often as possible to help his daily movements.

I hope you’re all okay managing your children’s appointments, I can’t imagine how difficult it all must be as I only have one child with complex needs

So sorry to hear that. A mixture of physical and mental health must be so challenging for your DC (and you too of course!) I feel sorry for my toddler as she gets older because I don’t want her to think she’s less important because so much more attention will be on her brother. I also feel bad when my DD has to come along to the odd appointment! Luckily she’s happy to be out and about in the buggy but who knows how long that will last for haha!

@AntlerRose I did have the form to fill out to claim DLA but I found it all so overwhelming that I didn’t finish filling it out. My mum has suggested that I try to fill out the form again and she’ll help me as a little contribution is more helpful than receiving nothing. DS will also need specialist equipment such as seats and bathing stuff so I need to make sure I have the funds in case I’m not able to borrow the things needed on the NHS.

@Thatsnotmycar I’ve never heard of any of those things so thank you. Can I ask what HomeStart and Unique do?
Funnily enough I had an awful birth with DD. I had a spinal puncture caused accidentally by an anaesthetist which took three procures to rectify. I lost 4L of blood during labour and literally nearly died. I had a debrief and CBT therapy to help cope with the trauma. My therapist was so good and I still had access to my file on Outlook so I used a lot of comping mechanisms that I previously learned to cope with everything. I honestly believe I’ve been able to cope so much easier because of the therapy I had at that time

@ItsBritneyBitch45 it is overwhelming the cerebra guide is useful as pp said.

Do apply for DLA, if you aren’t up to completing the forms yourself there are people that can help e.g. CAB, welfare rights, your local parent carer group might be able to help too.

There are many charities that can help fund equipment you aren’t able to get on the NHS. Before self funding anything investigate that route - when you think you need something post on the SN boards for charity recommendations.

On the note of charity grants, you should look at whether you are eligible for a motability car via family fund. Because under 3s aren’t eligible for the mobility element of DLA Family Fund provide cars to the parents of some under 3s.

Home Start support parents of DC under 5. They can provide a volunteer to help you in person, usually once a week. Unique is a charity that supports parents of DC with rare chromosome and gene disorders.

Thank you. I’ll definitely apply for DLA and I’ll also post on the SN board in future (I didn’t actually know there was one!)

Unfortunately I don’t know how to drive but that’s great to know regarding the mobility cars. I’ll also look into HomeStart tomorrow

I remember feeling everything was relentless at that early stage. Children grow and develop so quickly in the first few years that specialists want to be there, keeping an eye All. The. Time. Or at least that's how it feels.

My DD is 7 years old now and appointments reduced a lot from the age of 4 i think. She also has a genetic condition and has consultants from head to toe (literally, neurology down to Orthotics)

Sorry the gym comment wasn’t a judgement. I’m just impressed by you.

That’s really great to hear your DCs appointments calmed down as she got older, I’m really happy to hear that as it feels me with hope!